Talking about Chronic Illness
More and more people are living with chronic illness all the time, but society has not yet quite caught up with the idea. Those living with chronic illness often have to confront well-meaning ignorance and a general lack of provision for people with their condition.
One of the most challenging things about many chronic illnesses is that the sufferers often look perfectly ordinary. Not every condition involves having to use a wheelchair or other mobility aide, or even a walking-stick. People with conditions such as interstitial cystitis, arthritis, chronic fatigue syndrome, and many more, can have significant symptoms that do not show on the outside. If they need to use a disabled parking space or toilet, for example, they might be challenged by an angry passer-by who assumes that, because they look well, they are well, and are abusing the special facilities.
Being diagnosed with a chronic illness can be very upsetting. By definition, a chronic illness is something that never completely goes away, and that can last for a long time—even a lifetime. Some people react by going into denial and pretending that there is nothing wrong at all. Inevitably, this backfires as their family and friends cannot support them if they do not know what the issue is, and they cannot manage their energy levels effectively unless they admit—at least to themselves—that they need to give the matter some thought.
While many, if not most, chronic illnesses can be managed so as to minimise their impact on the quality of life of the sufferer, it is useful to develop a vocabulary that makes it easier to explain the condition to others. Many people with chronic illness use the metaphor of the “spoons”. The idea is that, each morning, they are given a finite number of “spoons”, which represent their energy levels or capacity for action. They have to choose carefully how to use them, because once they are all gone, they need to rest. For example, someone with a condition such as chronic fatigue syndrome may be able to do two or three “big” things per day, but no more. This means that they are less able to spontaneously do “extra” things than someone who is not ill. It doesn’t mean that they can never do anything, but just that they need to plan especially carefully to ensure that they are well enough.
As with all health conditions, stress and anxiety invariably make the symptoms associated with a chronic illness worse. There are many ways to reduce stress. Some people find it very helpful to join a support group where people with the same or similar conditions can give each other advice and encouragement. Many people also find it useful to take part in guided or self-guided meditation or mindfulness. Gentle forms of exercise such as yoga are excellent ways to stay in shape despite chronic illness. Making positive steps to get enough exercise and eat well makes a big difference too.
Chronic illnesses should be taken seriously—but they while they can last a lifetime, they don’t have to be a life sentence. With the right support and a positive attitude, most people with a chronic illness can enjoy a high quality of life.
WHO CAN I SPEAK TO FURTHER ABOUT THE ISSUES IN THIS ARTICLE?
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